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Everything posted by DIXZELAND

  1. I have seen Dr Levine and Dr. Suleman, both dx me with Pots. The thing with dr. Levine is that he doesn't see patients on a daily basis such as follow up care. He is a professor and only gives the Pots dx. On the other hand dr. Suleman has been my dr for 2 1/2 years. He also has a degree in journalism and will be starting his own talk radio or talk Internet live site to spread the word about Pots. He is a genius I think. He has 3 offices, speaks at the meetings held once a month in Richardson and devotes all his time to his patients. I don't know anything about the other 2 drs. Good luck!
  2. My own theory agreeing with AZ Girl, is that something underlying is causing the POTS. For me after two long years of battling POTS, my endocrinologist discovered I have Hyperparathryoid disease which can present all the symtpoms that have brought on my POTS. I am scheduled for sugery on my neck to remove the tumor(s) in Sept.
  3. I usually just relax all day and all night with little or nothing to do except watch tv, play a hand held game, crossword puzzles, etc. I take advil, and believe it or not, it actually helps me feel better. Be sure and drink lots of fluids too. It sometimes takes me a week to get better or longer before I can resume light activities.
  4. I have been going through a flare up since this past Tues. And yes, I feel so weak as one of my symptoms. I describe it as having a virus or the flu feeling. For everyday that my body is weak and tired, it will take me two more days to feel better. My heart rate is so high, I am having to use my alternate bp meds to help keep it down. I don't know what triggered my flare up again, but it's terrible. Hang in there, better days ahead as I always say.
  5. I have had POTS for 18 months. Suddenly appeared out of know where. I have all the symptoms above except my bp never got low. It was always very high along with a high heart rate. I have Osteoporosis at age 44. I went to see a new Endocrinologist because I wasn't able to strenthen my bones through meds and injections. My new doctor tested my Calcium, which I told him was always out of range "high", but no one seemed concerned. He test my calcium along with a PTh which is Parathyroid Hormone. And low and behold, it was high as well..I have Hyperparathyroid disease. If you read about this, it has all the symptoms as you described as above. I am not saying that everyone has POTS has this other disease, I am just saying that this is what is causing my POTS. I am going to meet with a surgeon in July to discuss removing my parathyroid gland(s), which ever one has the tumor growing on it. My POTS doctor said this indeed could be the culprit to causing all my POTS symptoms!!! Just thought I'd share, it might help someone else. Parathyroid disease is uncommon and surgery is the only fix. Parathyroid.com is the website.
  6. Hello all! I recently had a blood test in Sept. to check for abn. calcium and parathyroid, it all came back normal. Now, as of last week, both my calcium and parathyroid levels are high. I have to have a bone density test and a Sono of my neck to look at the parathyroids. Also I have to do a 24 hour urine. Anyone gone through this? They say it might be what is causing my POTS. The symptoms for Abnormal Parathyroid are mostly identical to POTS patients. Wish me luck:)
  7. I have had POTS for the past 18 months. I have been determined to find the cause myself. Because I have good insurance, I have persued onward to different specialist with a list of my symptoms. So far I don't have MS, a brain tumor or Renal Artery Stenosis. My next visit will be my Endocrinologist. I was dx with Menopause at age 44 along with Osteoporosis. I am now 48. I have an abnormal AgG titer which is high and a high ANA titer as well. After the Endo, on to the Rheumotolgist. There is something causing this, you just don't wake up one morning with POTS as I did with no explaination. ((hugs)) Dixie
  8. Hi! I just read your post about the patches. Right now I take Clonidine tablets x3 day. Sometimes I only have to take one pill depending on if my bp is normal or not. I was considering using the patches. What mg do you take and how often do you have to change them? Do you get dry mouth from them as well? Thank you so much for your response. Dixie

  9. That's wonderful news! This kind of story gives us all hope. I just posted a topic about "anyone ever gone into remission" and you my friend have answered it as YES:) This really puts a smile on my face. Again thanks, Dixie
  10. I've had my POTS for 18 months now. I may feel better without issues for 3 days at a time but then it all hits me again. Just wonderfin if anyone with POTS truly goes into remission for months or years at a time with no flare ups. I'd like to know the secret if so. I know by now there is no magical pill to take, but somethings gotta give
  11. Just curious to know if anyone uses the support hoses daily. I heard they are very uncomfortable. But if they really work, it would be worth the misery to wear them then to be miserable with the high bp. Thanks for comments!
  12. I always believe that when one door closes another one opens. This might be God's way of allowing him to find another church home with loving support. They need to understand that he is "physically challenged" and to not hold that against him because of his illness. Have you ever thought of him using a wheelchair? I had to resort to that. I didn't like the idea of using one, but after not being able to walk around and being left behind, I decided to use one. God Bless you both and don't give up on finding a new church, it was meant to be:) Dixie
  13. I get these tremors at night too. I can be awake watching tv in bed or sound asleep where they wake me up. Sometimes they are more like "jerking". It could be my shoulders, an arm, a foot, a leg, thigh etc. I just had an EEG done two days ago. They are looking to see if I might have "night seizures". ((hugs)) Dixie
  14. You are not alone. Every morning it takes me about two hours to adjust to getting out of bed. My bed frame is even elevated on blocks to help with the upright position. I take my medication and wait for it to work so that I can just drink my decaf coffee. If the symptoms don't respond, I have a back up pill I have to take. If I'm not careful, my anxiety gets the best of me. There are times that I went completely down hill. Changing medications is what helped me. The doctor trying to find the right one, the right dose. I still struggle though. This illness is not pleasant. POTSY's are unique as a snowflake, everyone is so different but so much the same. Glad you joined our post here. Lots of support because we all care about each other:) Dixie
  15. Yes, on bad days, it can get up to 188/108. They work high together:(
  16. My bp is always high, so to control it my dr. gives me Clonidine 0.6 mg 3 times a day. This helps relax the blood vessels so the heart doesn't have to pump as hard. It's not a beta blocker. Sometimes I only take two, because it makes my bp get really low. Good luck;)
  17. I have a question for any of you with MCA. What kind of specialist takes care of pt's with this? I've been reading a lot about it. Just curious. Thanks, Dixie
  18. I too am a naural worrier. I am always thinking of the "next" flare up. When is it coming, how bad is it going to be, etc. I think I may have OCD. I try to think positive, but it's hard for me to do. I repeatedly take my bp hoping that its not high. I just have to "see" that it is normal so I can quit worrying for a few hours. I understand how you feel. Dixie
  19. Welcome to the POTSY family Ryan. We are glad you finally have the dx you've been waiting for. Please keep us updated on any new information they find. Dixie
  20. Iknow how you feel my dear. I am going through so much right now and can't eat. I have no desire to eat. I have lost 8 lbs in 1.5 weeks now weighing 117 lbs. The thought of food just makes me want to throw up. My panic attacks are constant. Please know that you are not alone. We will have good days again
  21. I am adopted so I don't know anything about my family tree. I am not diabetic, don't smoke, never had high bp in my life until that one odd day and then ever since. I have always had a high ANA, but only met 3 of the 4 criteria for having LUPUS. I am so thankful that my POTS/cardiologist is smart enough to have ordered such a test. My prayers to God was that He would give my cardiologist the knowledge to dig deeper into finging why my bp wouldn't respond to medication. And HE did! Thanks for your post:) Dixie
  22. my POTS/Cardiologist ordered the Renal Artery Ultra Sound yesterday. My Nephrologist had ordered just a plain Ultra Sound of the kidneys because I was having hematuria. I did not have any symptoms of POTS while I was see my Nephrologist a few years ago.
  23. High bp upon sitting upright and standing. High hr as well as sitting upright and standing. Symptoms of these are better or normal upon laying down. I get confused when the bp is past the 150/99's. I get nausea and anxiety. I sometimes have trouble eating as even a small meal makes me feel like it just "sits" in my stomach and doesn't digest. I was told that a Vascular surgeon would do the stent placement. So if you are interested in getting tested look for this type of specialist. I do have a nephrologist because I have Hematuria. I've had IVP's, Kidney Ultra Sound but everything was normal. So I don't have an answer to this. Good luck and I hope you find someone to test you for what I have found.
  24. Thanks for reading my post Sue. I just want to help others to have this test as it could also be going on with them and they don't know it. I am in a wheelchair now to help keep the bp from getting into the 200/100 range. I weigh 118 and for me that high bp gets the best of me. I may have Kidney disease, but its too soon to tell until I see a vascular surgeon.
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